Retigabine (Trobalt, Potiga) — General Discussion

[Robb]

@attheedgeofscience yes please; ask his opinion on AM101. As I had only one shot say after having one year of T due to slap on ear; I would like to know if AM101 could have worsened my T.
Any tips how to deal with T resulting from such specific injury are welcome.

Many thanks for helping out.

 

[locoyeti]

I will be seeing the Swiss neurosurgeon, Professor Jeanmonod, next week (in Switzerland). If there are any specific questions in relation to Trobalt, I can ask those when I see him.

Fire away...

Would successive treatment cycles (something like 3 months on, three months off, for a specified period of say, a year) help? I am thinking of trialing this for 3 months, and if i get only partial results, will try again 3 months later (2 treatment cycles).

 

[Robb]

Would successive treatment cycles (something like 3 months on, three months off, for a specified period of say, a year) help? I am thinking of trialing this for 3 months, and if i get only partial results, will try again 3 months later (2 treatment cycles).

Good questions. Respect for those who continue experimenting!

 

[Johno]

Ok, from now i have complete set of trobalt boxes - 2x 200mgx84 and 2x 100mgx84. I can continue with this experiment

 

[ENZO]

Hello from Australia,
I have been viewing the Trobalt pages for the last month and have just signed up. I am very proud of how dedicated you all are. I have had no success in getting Trobalt through my doctor or on line through the UK and Canadian web sites (have tried 5). Does someone know the name of a Trobalt supplier in maybe Italy or Europe that might supply without a prescription as I am very keen to order and try for myself and all involved. The prices seem much more resonable in Europe compared to the US and Canada. I have had T in both ears and bad H in the left ear since 1986 at the age of 19 from a very loud rock concert and have struggled but lived with it, just at times. But since January 2013 it has increased dramatically in my left ear from a loud explosion that was only 5 metres from my left ear. Not good at all. I had very painful H for 10 very long weeks and still pain issues todaybut the T is sooooo much louder since January 2013 and has become intolerable. Even driving my car with the radio on I can still hear the ringing let alone at work in the office, watching tv or a movie, talking to my family. I hope we can all have just some of the type of releive like mpt has had. Thank you all for your wondeful efforts at trying to beat or at least lower these horrible conditions we call T and H
Enzo



Thanks Enzo

 

[dan]

Hello Enzo, welcome to the forum.
I really don't think that anybody will send you this drug without a prescription.
In Italy you can buy it without a prescription but you need to be there in person.
That is what I think and from what I heard.

 

[dan]

I have a question for prof. Jeanmonod...

- Do you know what Trobalt is?

(an important opening question, i believe )

Very good question!
Folks i'm sorry to break it to you but Dr.Jeanmonod isn't an expert on pharma pills.
He's a neuro-surgeon.
I have tried to PM you @attheedgeofscience and also informed you directly on this forum at one point, that I have been to Dr.Jeanmonod's clinic a YEAR ago, and I would like to co-operate with you on things you can find out that have changed since I've been there - yet for some reason you are ignoring my appeals to you...please can you PM me or respond here.
Let us work together on this...

I can tell you right now that I already asked Dr.Jeanmonod about what he thinks of AM101, and his answer to me was that he thinks nothing of it because he believes tinnitus (especially chronic one) is in the brain. So it CAN work for acute tinnitus, but that is NOT his specialty.
I think that you can try to ask him about Trobalt, although I doubt he even heard of it.
The medications/therapies that he recommends before undergoing brain surgery (as a last resort) are
TRT
Psychotherapy (he's big on that one)
Anti-depressants
Tegretol

@attheedgeofscience , please respond.

 

[SteveToHeal]

Very good question!
Folks i'm sorry to break it to you but Dr.Jeanmonod isn't an expert on pharma pills.
He's a neuro-surgeon.
I have tried to PM you @attheedgeofscience and also informed you directly on this forum at one point, that I have been to Dr.Jeanmonod's clinic a YEAR ago, and I would like to co-operate with you on things you can find out that have changed since I've been there - yet for some reason you are ignoring my appeals to you...please can you PM me or respond here.
Let us work together on this...

I can tell you right now that I already asked Dr.Jeanmonod about what he thinks of AM101, and his answer to me was that he thinks nothing of it because he believes tinnitus (especially chronic one) is in the brain. So it CAN work for acute tinnitus, but that is NOT his specialty.
I think that you can try to ask him about Trobalt, although I doubt he even heard of it.
The medications/therapies that he recommends before undergoing brain surgery (as a last resort) are
TRT
Psychotherapy (he's big on that one)
Anti-depressants
Tegretol

@attheedgeofscience , please respond.

Hey dan. This is a bit off topic but have you had any luck with Tegretol, at least as something to help cope with t?

What is Tegretol?
Tegretol (carbamazepine) is an anticonvulsant. It works by decreasing nerve impulses that cause seizures and pain.

Tegretol is used to treat seizures and nerve pain such as trigeminal neuralgia and diabetic neuropathy. Carbamazepine is also used to treat bipolar disorder.

 

[dan]

No i haven't tried it, its side effects are even worse than Trobalt. It is also not a potassium channel opener, I think it has to do with sodium channels.
I know Craig tried it, and his T disappeared for about a month, then came back in full.

 

[SteveToHeal]

No i haven't tried it, its side effects are even worse than Trobalt. It is also not a potassium channel opener, I think it has to do with sodium channels.
I know Craig tried it, and his T disappeared for about a month, then came back in full.

Thanks dan. That's a bust then. Back to getting Retigabine...

Hey @Christian78

Just saw your user update yesterday @ https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-user-experiences.6047/page-2


Progress Report

Progress Report Date:
Oct 29, 2014

Current Retigabine Dosage:
300*3

Current Side Effects:
amnesia, dizziness, but less side effects than before

Current Tinnitus Severity:
5 out of 10

Changes in Tinnitus:
It is becoming stronger and stronger, becoming hard to fall a sleep, and in the middle of night waking up and it is so strong takes me time to fall back to sleep, changes to this started 5 days ago, but t is constantly getting worse

Other Medications/Supplements:
5mg sleeping pill if t is bad, 4mg diazepam


Things were getting better for you but now they seem to be going the other way. Not great news for you. Sorry to hear this. Are you planning on staying on it in the hope that it improves?

 

[attheedgeofscience]

I have a question for prof. Jeanmonod...

- Do you know what Trobalt is?

(an important opening question, i believe )

I can also not ask him at all.

Not a problem, really.

 

[attheedgeofscience]

@attheedgeofscience yes please; ask his opinion on AM101. As I had only one shot say after having one year of T due to slap on ear; I would like to know if AM101 could have worsened my T.
Any tips how to deal with T resulting from such specific injury are welcome.

Many thanks for helping out.

No problem. But I doubt he would have any opinion on the AM101 study. In fact, I "kind of" spoke with him about it already (when he asked me what I had been up to over the last year - that was when I spoke with him in April, this year). Even though Auris Medical is based in Switzerland - like himself - he did not immediately "catch on" to the subject when I mentioned the name.

The reason I will be having a conversation with him about "alternatives" is because:

1. He is a world class neuro-surgeon performing a unique type of surgery and who specializes in - amongst other things - epilepsy.
2. Despite being a surgeon, he actually prefers to avoid surgery if at all possible, and would like patients to try eg. drugs first.

Seeing Prof. Jeanmonod is a unique chance to get the very best expert advice within the field of tinnitus. His consultation fee alone is CHF 1000,- and there is a ½-year waiting list for an appointment. So he is not your average doctor "down the block".

 

[undecided]

Please do ask him. The other members posted some very valid and useful questions for the prof.
I was merely trying to be realistic and certainly meant no offense towards your good intentions.

 

[valeri]

Very good question!
Folks i'm sorry to break it to you but Dr.Jeanmonod isn't an expert on pharma pills.
He's a neuro-surgeon.
I have tried to PM you @attheedgeofscience and also informed you directly on this forum at one point, that I have been to Dr.Jeanmonod's clinic a YEAR ago, and I would like to co-operate with you on things you can find out that have changed since I've been there - yet for some reason you are ignoring my appeals to you...please can you PM me or respond here.
Let us work together on this...

I can tell you right now that I already asked Dr.Jeanmonod about what he thinks of AM101, and his answer to me was that he thinks nothing of it because he believes tinnitus (especially chronic one) is in the brain. So it CAN work for acute tinnitus, but that is NOT his specialty.
I think that you can try to ask him about Trobalt, although I doubt he even heard of it.
The medications/therapies that he recommends before undergoing brain surgery (as a last resort) are
TRT
Psychotherapy (he's big on that one)
Anti-depressants
Tegretol

@attheedgeofscience , please respond.

Dan can you please clarify few things here!
What was the outcome of your visit to this surgeon?
Does one have to pay 1000CHF (according to ateos) to be told to try things we already know exist?
Does he cure tinnitus with neuro surgeries?

I just don't understand all the fuss if he can't help/cure it!

Hope you can make this bit more clearer, thanks!

 

[SteveToHeal]

1. He is a world class neuro-surgeon performing a unique type of surgery and who specializes in - amongst other things - epilepsy.

If epilepsy is his specialty, then definitely quiz him on the Retigabine questions posted above (not sure if Autifony can be linked to epilepsy). Thanks ateos for putting out the offer to ask him our questions at no doubt your expense of consultation. Much appreciated.

 

[attheedgeofscience]

Does one have to pay 1000CHF (according to ateos) to be told to try things we already know exist?

See this for cost break-down.

https://www.tinnitustalk.com/thread...used-ultrasound-surgery.276/page-7#post-73183

I just don't understand all the fuss if he can't help/cure it!

Getting an objective diagnosis for a subjective condition is medically pretty tricky (but can be done using a qEEG scan). Your average GP/ENT/neurologist will usually tell patients that their tinnitus is related to reasons X, Y, Z - by relying primarily on audiograms - and send the very same patients on a wild-goose chase in terms of treatments because they are effectively making up a diagnosis when - in reality - they really have no clue. In fact, not only do they not have a clue, they will even get the diagnosis entirely wrong: tinnitus is just about always related to damage of the inner ear (known as lesions of the cochlea; this can come about acutely or develop over long periods of time). But doctors - with their infinite wisdom of tinnitus - will look at the audiogram and say "your hearing is normal" and hence ship you off to the chiropractor/dentist/radiologist/etc - when in fact it is an ENT problem to begin with.

Not only is there not a mass market cure at this very point in time; there is not even a mass market diagnosis for tinnitus! That's the reality of medicine in the year 2014. And yes, we did fly to the Moon some 45 years ago. And yes, both GPS and the Internet has been around for a good while too. But not everything evolves at the same speed. Evidently.

 

[Zimichael]

ATEOS... Ref. questions for Jeanmonod.

I think you can get the gist of the key questions posed so far, as we sort of can guess some of the answers just from our own trials, etc. (E.G. Speed of taper up I reckon has a lot to do with individual's side effects, or lack thereof...And maybe a good time to stop is as soon as you think T may have abated for a goodly while then see if it has "gone" when go off Trobalt a la Matt. I bet this is very "individual", as check Christian's current situation. Etc.).
I guess what I am trying to say is that at that price, you may not want to spend too much time on a 'side subject' unless you are truly interested in it too!

OK so one for your list, and a good "neuro drug" one:
~ Any opinion on taking a Benzo (ref > GABA) along with Trobalt? Supposed "plasticity" effects...good or bad?

Thanks much, and look forward to hearing what will no doubt be an intriguing, detailed, insightful, fascinating "ATEOS style" report from your visit with him. (Presumably in a new thread or the HIFU thread).

Zimichael

 

[locoyeti]

@Christian78 How are you doing? Has your T better now? We would really appreciate some detailed updates, hope you are feeling better

 

[Christian78]

@Christian78 are you planning on tapering off any time soon?

not still, but as my condition became worse i will have to, I dont beleave tinnitus will be any less that before starting meds, maybe only stronger, as he is becoming or something is happening, i have a hard time to sleep and i hear it much stronger

Does other do detailed update every weeks or something?

 

[valeri]

Getting an objective diagnosis for a subjective condition is medically pretty tricky (but can be done using a qEEG scan). Your average GP/ENT/neurologist will usually tell patients that their tinnitus is related to reasons X, Y, Z - by relying primarily on audiograms - and send the very same patients on a wild-goose chase in terms of treatments because they are effectively making up a diagnosis when - in reality - they really have no clue. In fact, not only do they not have a clue, they will even get the diagnosis entirely wrong: tinnitus is just about always related to damage of the inner ear (known as lesions of the cochlea; this can come about acutely or develop over long periods of time). But doctors - with their infinite wisdom of tinnitus - will look at the audiogram and say "your hearing is normal" and hence ship you off to the chiropractor/dentist/radiologist/etc - when in fact it is an ENT problem to begin with.

Not only is there not a mass market cure at this very point in time; there is not even a mass market diagnosis for tinnitus! That's the reality of medicine in the year 2014. And yes, we did fly to the Moon some 45 years ago. And yes, both GPS and the Internet has been around for a good while too. But not everything evolves at the same speed. Evidently.

This is all well and good but what is the point of finding the exact cause of t when in reality and to this date there is nothing he can do about it?

In my opinion paying that much money for some fancy testing and diagnosis and going to bed with t that night, and many more to come, doesn't make much sense to me, but that's my personal opinion.

I don't care what caused it if they can't cure it!

 

[Robb]

not still, but as my condition became worse i will have to, I dont beleave tinnitus will be any less that before starting meds, maybe only stronger, as he is becoming or something is happening, i have a hard time to sleep and i hear it much stronger

Does other do detailed update every weeks or something?

All I can say to you is that you have T for now a year sames as me. More patience and fighting is needed for us both;
we need to do at least 18 months in our case to get some habituation.
Also I think that quitting the meds cause a temporary increase

 

[Christian78]

All I can say to you is that you have T for now a year sames as me. More patience and fighting is needed for us both;
we need to do at least 18 months in our case to get some habituation.
Also I think that quitting the meds cause a temporary increase

i had little t, and then i got real t 6 months ago. So my habituation is like 6 month old, but my t increases with time. On the end i will just kill myself. And no one will prevent me or talk me out of it, it is just fact and i dont wanna discuss it.

 

[jeannie]

Christian, please dont do anything drastic!!! we are all in this together ...

 

[Robb]

i had little t, and then i got real t 6 months ago. So my habituation is like 6 month old, but my t increases with time. On the end i will just kill myself. And no one will prevent me or talk me out of it, it is just fact and i dont wanna discuss it.

If that is the case try AM-101, if that doesn't work, than please consider SoniModul! In Swiss or do TRT or ACRN.
6 Months is not long don't give up! Think about Dr. Naglers case or many others!

Ok I read you got T from anti depressant in may so you have suffered ototoxic damage.

When you got T in september 2013 did you keep taking antidepressant until may 2014?
Are you now taking any form of antidepressants?

Please tell me what you take from medicines now including alchohol and cigarettes

 

[Christian78]

If that is the case try AM-101, if that doesn't work, than please consider SoniModul! In Swiss or do TRT or ACRN.
6 Months is not long don't give up! Think about Dr. Naglers case or many others!

Ok I read you got T from anti depressant in may so you have suffered ototoxic damage.

When you got T in september 2013 did you keep taking antidepressant until may 2014?
Are you now taking any form of antidepressants?

Please tell me what you take from medicines now including alchohol and cigarettes

i dont smoke or dring, my real tinnitus is 6 months old. I dont use antidepressant. Jeanmonod is rip off i dont have that money.

Antidepressant i used 3 days.
medicine for sleeping pill, 3 mg diazepam, 300mg*3 trobalt

 

[rtwombly]

Does other do detailed update every weeks or something?

We are eager for any news, but I am sorry to hear you are having more noise these days instead of less. Do you think now that your improvement from Retigabine was temporary?

Remember the good days, please. Do not think that all is hopeless. You have had some success already, maybe more is to come. If not with this medication, maybe with another. Haven't we learned that anything can happen tomorrow? Good things can happen, not only bad.

 

[locoyeti]

i dont smoke or dring, my real tinnitus is 6 months old. I dont use antidepressant. Jeanmonod is rip off i dont have that money.

Antidepressant i used 3 days.
medicine for sleeping pill, 3 mg diazepam, 300mg*3 trobalt

This is not good news. @Johno @SoulStation @Bogdan you guys are the only others that have been on this drug for a long time. Do you notice anything at all that would suggest that you might have a similar experience to @Christian78 ?

 

[Danny Boy]

i had little t, and then i got real t 6 months ago. So my habituation is like 6 month old, but my t increases with time. On the end i will just kill myself. And no one will prevent me or talk me out of it, it is just fact and i dont wanna discuss it.

This is why something needs to be done about tinnitus...People suffer so badly that they want to kill themselves....

 

[Robb]

i dont smoke or dring, my real tinnitus is 6 months old. I dont use antidepressant. Jeanmonod is rip off i dont have that money.

Antidepressant i used 3 days.
medicine for sleeping pill, 3 mg diazepam, 300mg*3 trobalt

Ok; here is the deal; stop taking diazepam as it is a Benzodiapine; clearly you are sensitive to these kind of drugs.
Than also start tapering of with trobalt.

I understand you don't use antidepressant anymore but how long and how much did you take of it in your life? As these are benzodiapines we need to eliminate this from your system..

Best Robb

 

[SoulStation]

This is not good news. @Johno @SoulStation @Bogdan you guys are the only others that have been on this drug for a long time. Do you notice anything at all that would suggest that you might have a similar experience to @Christian78 ?

I have not had such results. Dont let thst stop you. I think some of the people who have had good results arent haning around too much. Our sample group is so small too.